GROWING up, I spent a lot of time in hospitals. My sister died of complications from birth defects when she was a year old, and in later years my mother developed multiple sclerosis. Both she and my grandmother died from the disease. I faced several difficult situations and learned to remain calm in a crisis.
Having a family member with a disability was not easy. I saw how hard it was to navigate in a wheelchair, and that people were often condescending. They’d address my father when they had a question for my mother. She’d tell them, “You can speak to me.”
I also see that happening today to those with hearing loss. People sometimes think that someone who can’t hear has trouble processing information, so they address someone else instead.
I majored in religion at Temple University. In my junior year, I studied in Rome. It was one of the best experiences of my life. I remember how my classmates and I would go to an all-night bakery for chocolate croissants that had just come out of the oven.
After graduating in 2000, I worked at a synagogue for a year as the executive assistant to the clergy, then moved to New York University as special events manager and coordinator for the dean of the College of Arts and Science. While at N.Y.U., I enrolled for a master’s in education. I learned from the dean that the way to be a fund-raiser was to find out what was meaningful to people invested in our community and to get them more involved. Asking for money goes only so far.
In 2006, I went to work for Bear Stearns as a fixed-income corporate marketing and events manager for a year. I wanted to work for a nonprofit group, and in 2007 I was offered the position of chief operating officer at the Hearing Health Foundation. I was promoted to executive director in 2010.
Until September 2011, we were known as the Deafness Research Foundation. But we wanted our name to cover the full range of hearing loss, as opposed to how people thought of deafness years ago. Most of our constituents would probably say that they have hearing loss or hearing impairment but would not say that they’re deaf.
We fund hearing research. Our emerging research grants program pays for research at a junior level. We hope that two years after receiving our help and collecting their data, researchers will receive funding from the National Institute on Deafness and Other Communication Disorders. We also hope to encourage scientists to enter the field of hearing research.
My grandmother had terrible difficulty hearing but refused to get a hearing aid. When talking to her, everyone in the family yelled, trying to be heard. I remember holiday dinners when she’d deliberately look down and stare at her hands.
Once I tried to start a conversation with her, but she said, “Honey, it’s just too hard for me to hear with all this going on.” I realized that she avoided making eye contact so that no one would try to engage her in conversation. It broke my heart. I hear such examples again and again when I talk to people with hearing loss.
In the 1960s, we funded some of the initial studies on cochlear implants, and last year we started the Hearing Restoration Project, in which researchers are working on a cure for hearing loss. We’ve learned that chickens can recover their ability to hear and that mice can recover partial hearing. We believe that scientists can achieve the same results for people.
As told to Patricia R. Olsen.